(Thanks to Dr. Gurwitt for allowing Health Rising to post his revised blog. I added the images and altered the title and headlines – Cort)
NO SIGNS OF LIFE AT THE BIG HEALTH AGENCIES
I believe only strong outside forces will cause HHS and NIH to move in constructive ways. Alan Gurwitt M.D.
Over four months have passed since the release of the report from the Institute of Medicine on February 10th of this year. In spite of the IOM’s efforts to spread their conclusions and thoughtful review and debate about the report on the part of patient advocates, CFSAC, interested clinicians and researchers, no consensus has been reached nor is there any signs of a significant response at the large federal health agencies.
Four months after two federally reports called for significant increases in funding – no signs of major changes have emerged
The federal DFO’s (designated federal officers) come and go at CFSAC. While the CFSAC members keep trying, they are often ignored. There is not a peep from HHS and NIH. Except for some promising responses from the CDC, there is silence.
Dr. Francis Collins, the director of NIH says he is aware of the requests for greater NIH involvement but continues to do nothing.
Dr. Anthony Fauci, in office since 1984 as head of the National Institute of Allergy and Infectious Diseases (NIAID), continues to make it clear he wants little to do with ME/CFS. While many agree that the work on ME/CFS belongs in one of NIH’s institutes with research funding, not in the Office of Women’s Health, there is no person or group at NIH and HHS who is leading the charge and no indication so far that the leaders have heard the call.
Some individual lower level personnel have gotten the message and have done what they could, but an overriding indifference has prevailed for thirty years and there are no signs of motivation to change. I believe only strong outside forces will cause HHS and NIH to move in constructive ways.
Under present circumstances, it does us no good to sit and wait another four months for the government’s response. Whether or not HHS and NIH eventually respond, we patients, advocates, researchers and allies in the medical professions must review and change our tactics and directions, otherwise we will remain stuck in nowheresville. We have tried for years, with some success, to make our illness and cause known, but our struggle too often is ignored or is seen as unwelcome.
Alone, we are and have been vulnerable and ineffective despite the heroic efforts of our advocates and allies. To have greater impact we must supplement and reorganize our forces and improve our strategies.
So, where should we go from here? I believe that there needs to be a series of coordinated steps to build effective and constructive outside forces. As I see it, the possible steps are the following:
- Form Political Action Group – We have been told for years that the federal health agencies will only shift course when Congress demands such. We should establish a group to research and plan how to best educate and recruit Congress people from as many states as possible to act together in Congress. ME/CFS is a bipartisan cause and a very serious national problem. Coordination will be absolutely key.
- Produce Research Roadmap – Recruit a coalition of medical professionals, both researchers and clinicians, and institutions outside of the government to map out what are the key areas of needed research, both basic and clinical. To some extent this has already been done. The IOM and recently published P2P reports have outlined many of the key areas. The IACFS/ME, by bringing together researchers and clinicians from all over the world, has helped set the stage. The Solve CFS/ME Initiative has for years sponsored beginning research on important aspects.
- Create National ME/CFS Advocacy Organization – Form a planning group to think through the goals of a long overdue national ME/CFS organization, as well as its possible structure and staffing. It is only by creating such an alliance can the above steps be initiated and coordinated. This should take no more than a year.
- Create International Liaison Group – As part of the goals of the national organization a liaison group should be created to collaborate with patient groups and clinicians in other countries. ME/CFS doesn’t recognize boundaries. There is much to learn from one another. Australia and New Zealand have succeeded in educating a higher percentage of physicians. Norway is doing key research on whether ME/CFS is an autoimmune illness. The UK has many research efforts in process. In all these cases patient organizations have played a key part.
- Work Together – We must stop the pattern of fighting and undercutting among ourselves. This pattern has been an important reason for limited participation on the part of some advocates and contributed to our fragmentation. If we don’t all work together in a respectful manner to achieve common goals we defeat ourselves. We have large challenges to overcome but at times we have been our own worst enemies.
- Work with Urgency – Time is of the essence otherwise positive components of the both the IOM and P2P reports might die. Let us not miss the opportunities opened up by these reports
I believe the IOM and P2P reports are game changers if we utilize the achievable big findings and recommendations. Of course name and diagnostic criteria are important, but it is only with further research that both will become clear. The other big findings which we can use to propel our work now are:
- ME/CFS is a biological, not psychological disease.
- For many years patients with ME/CFS have been undiagnosed, misdiagnosed, mistreated and harmed by uninformed healthcare professionals and shamefully negligent medical educators and medical organizations. We must figure out what are the blocks to learning and how to overcome them, otherwise ignorance will continue.
- Children and adolescents present somewhat differently but have a better prognosis IF diagnosed early and well managed. Useful pediatric ME/CFS research is even sparser than for adults. That must change.
- There are huge gaps in our scientific understanding of ME/CFS in both children and adults as a result of a biased and indifferent federal government, which has almost totally failed for decades, to provide the necessary research funds and leadership. In response to the initiatives on the part of HHS and NIH to bring about the P2P and IOM reports, the reports should not be DOA (dead on arrival) and the leaders AWOL (absent without leave).
Summary
In summary, nothing will change until we change. We must not wait for the federal health agencies nor should we go it alone. We must take a series of steps. One step is to create a multi-pronged coordinated and comprehensive effort to recruit congressional support. We must also build a strong national coalition of patients, advocates, and professionals. We have many wonderfully informed, thoughtful, and active patient advocates among us but our failure to coalesce has created a major obstacle. The challenges are great so our efforts must be greatly smarter, focused, and more effective.
Failure to change our efforts and directions will doom us to remaining stuck. We should utilize our own capacities and wait no more.
Alan Gurwitt, M.D.
6/19/15
Dr. Alan Gurwitt’s opinions here are his own and do not represent the Mass. ME/CFS and FM Association and its Board.
(Alan Gurwitt is a retired psychiatrist who has lived with chronic fatigue syndrome for more than 20 years. Dr. Gurwitt was associate clinical professor at the Yale Child Study and the department of psychiatry at the University of Connecticut School of Medicine. He was also a Lecturer at Harvard Medical School. He is a board member of the Massachusetts CFIDS Association. He co-authored the 2006 Pediatric Case Definition and the IACFS/ME Primer for Clinicians.)
Thank you for publishing this. I completely agree that we need to make a move.
But where do I start?
Anywhere, literally.
By signing this for example.
http://my.meaction.net/petitions/us-congress-me-patients-around-the-world-care-about-funding-equality
And then by spreading the word.
I was never the type of guy who does that, but yeterday I got something like 50 signatures (before we were getting 1 a day). And I know most of us doesn’t like to ask or talk with friends about our illness (I’m on that case scenario too), so I just went for ME/CFS and FMS patients.
And I think anything we can advocate must be directed to centers that are moving foward like Open Medicine Institute for example.
There are others too certainly, but here’s one to go for if you don’t who to help and/or follow.
:))
We just can’t stand still anymore. Standing still is giving more PEM than moving foward.
Thank you. I signed it and forwarded it to my friends and family.
But I’m worried these online petitions have little or no effect. We need to do something more tangible.
That’s good you think that way.
The more we do the better.
Since we have internet now, we might organize Skype online calls with groups to discuss how to act properly.
This is a wonderful petition, that my wife and both signed and now will forward to everyone I know to get hopefully many more to sign. At least this is well written and VERY easy to sign. It may have an impact, and doing nothing has no impact. Thanks for making this easy!
I was very pleased to read this report by a Psychiatrist who suffers from ME! Now that should bring credibility to the fact that ME/CFS is a physiological disease.
Now my question is: who will lead the way with all the great ideas I’ve heard from Dr. Gurwitt and others that have been posted on this blog? I know for myself I can just make it through the day as it is. Is there anybody out there with the mental and physical stamina to carry the charge, lead the way?
Cort (and others) have been doing a fantastic job getting new info out to us. It usually gives me hope until I read that, really, not much has changed in the past 30 years with insight into the etiology of this disease let alone a cure or standard treatments.
I went to my family doctor last week, there was a vacation replacement doctor and she had recently graduated. Needless to say she had never heard of ME/CFS, sort of knew about CFS but not in a medical sense. I felt like I have been banging my head against the wall trying to educate “educated” doctors. But that’s the little bit I can do, spread the word and hopefully they listen. I do refer them to Health Rising for more info. I do find this site has the best medically-backed information that would benefit all health care workers.
It’s now time for my nap. Zzzzzzzzzzzzzzz
I agree but I think it’s too big a bite. I think the first thing is the political Action Group, with a someone to do the lobbying. Get the funds from the NIH/CDC like the AIDS people did. It can be done if we get the right people working on congress. Once we have the money, then move from there, too many of the established groups are set and doing nothing.
I agree lobbying is the only way to get progress. It’s a political road block that requires a political remedy. Removal of Collins and Fauci and the like must be a big part of it just as Bill Reeves had to go previously. Until the way is cleared with new people willing to accept new ideas rather than people entrenched in the old dogma and resisting progress at every turn within the system we will get no where despite any scientific progress that is made. Change has to come from the top.
I completely agree with Dr. Gurwitt but also ask how we can make this happen? If we could,at a minimum, get the political action going it might help build momentum.
As an aside, , I’ve been following the bipartisan House Committee on 21st Century Cures; patient advocacy, research organizations, and medical/biotech industry is all over this initiative but where is MECFS? Not jumping all over this opportunity like all the others representing all kinds of diseases. The 21st Century Cures initiative has gotten approval to increase NIH funding by 10 billion dollars over five year– some of it needs to go to MECFS!
Just so you know some people working on more drugs for ME/CFS have been following this initiative closely…I don’t if we could have gotten in there – but the initiative is a really good one that should help.
I agree that we need lobbying, but seriously doubt any PAC formed could get funding from the NIH or CDC. The truth is that they don’t care about us and won’t until they become ill with ME/CFS themselves.
I agree. They do not care. No money in it. And imho, not even those closest to a person with CFIDS/ME/whatever can actually ‘get it’, relate. It is a bizarre disease. There was nothing in my prior life that I can now look back upon and say, “What I experience is sort of like ‘that’.
Other diseases have been in a similar situation and have ended up getting funded. The same will happen to us…
I agree complete. They don’t consider disabled or sick people to be worth any efforts in Washington. Not enough campaign money.
I would suggest that they hire the gay marriage lobbyists to get things rolling, since they might actually get something done on a national level. I’m serious.
They’re active and they’re funded. We’re not active and we’re not funded but it has to start somewhere. You start where you are. ..
With over $2000/patient spent on HIV/AIDS R&D and $5/patient spent per ME-CFS patient:
THE FEDERAL GOVERMENT AND NIH ARE CLEARLY PRACTICING DISCRIMINATION AGAINST M.E.!
We need to bring this discrimination up publicly to increase NIH funding.
In the meantime, since govt works very slowly, based on 30 years history, we all need to seek self funding and corporate funding to find definitive diagnoses and cures for this disease. If you or family work for large companies, please seek there supports, since many large companies have spent ten of millions on AID (Chevron for example). Also, about 100 billionaires have pledged to give away their assets in their lifetimes, since they know they cannot take it with them, so we should get more visible so END-MECFS.org is as common in public as HIV/AIDS, since these are comparable in incidence, yet M.E. is worse now than AIDS, with no definitive treatments.
If I were to print bumper stickers, such as:
Unbroken: cure M.E.!
End-MECFS.org
Would you place them on front and rear bumpers of you cars, or would your family and friends do this to gain support?
Love it = thanks Mark
End-MECFS.org needs corporate funding to make up for the discrimination by the Feds/NIH against this disease.
A list of the top 50 donors is given at:
https://philanthropy.com/interactives/phil-50
If you know any of these people or employees with their companies, please write and ask they support R&D for this disease. They can get in early and have a large impact on disease that might yield a cure for ME-CFS and perhaps other neuroimmune diseases.
Tim Cook of Apple, Bill Gates, many others have committed to giving away most of their fortunes in their lifetimes, and can think of now better cause than ME-CFS.
Please write to them for support.
We need strong marketing and well known celebretys. We need to get philanthropists. We need someone that can reach out that has the ability to reach out. We need top newspaper people wall street journal and new York times. I keep saying same things but no one will follow up on this site period. NIH and CDC does not care period. They will only move when they are forced to move. That means extreme pressure. They have no incentive as they get paid there salary no matter what they do or don’t do. We need to think like business people here.e also need to eliminate people that don’t have biomarkers for rhis illness. Sorry people but that’s the way to gain trust. There are several biomarkers now. Why are we still making this easy for them to ignore us? They can’t argue agaist real test results. This is a autoimmune under immune neuroimmune -cns- inflamatorry disease. Do you think insurance companies and government really care to call it that and pay for it? Again it comes to the point of defining the disease as such from biomarkers. Secondary issues are also there which in my case includes 2 cancers and dysautonima and more. If you had cfs for years and you come down with lymphoma believe me the lymphoma is secondafy and caused by cfs. I have not seen one person here bare a few and ofcourse Cort that wants to fight by using my simple ideas of how to get this going. Think like a marketer and business person and we will get what we need. That means boots on the ground. Sorry about my spelling and hard words but we all need a wake up call and a positive strong fight. If we must strike out then let’s strike out swinging hard.
Jimmy, I think what you say is true. The more constructive noise we make, the better. However, my boots are on the couch and only can get on the ground to go to the kitchen and bathroom 🙁
A group of healthy advocates would be great, but even our healthy allies aren’t sure what to think – as pointed out in earlier comments.
In 2004 our support group had an FM/ CFS Walk in L.A. Had t shirts, food , tried to get media. nothing. We did raise $10,000 for a national group. We were all too exhausted to ever do that again.
About a year earlier ( when we were still sort of affiliated with the Arthritis Foundation) I organized a protest letter concerning a publication printed by the Arthritis Foundation called ” Update on Fibromyalgia Syndrome.” This was being used to educate doctors. It was a terrible put down of patients – implying all the worst about us. I also sent the letter to the CEO of the major drug company who financially sponsored this Update.
We asked for a rewrite of this publication, and included specific points. What happened? The drug company sent a nice letter to me ( I was group leader) on gold embossed stationary. I got a call from the Arthritis Foundation saying that either I step down as group leader, or there would be no more affiliation with that group. We took a vote, and completely disconnected from the AF.
The point of this is : We are dealing with BIG power and BIG money interwoven with bias. I have wondered long and hard WHY our recognition has been so difficult. The answers may lie in unexpected places.
I like your last line Merida. I think the answers will lie in unexpected places.
Great article- AIDS patients got noticed by forcing the government to notice them. I think we need to do the same but it is hard with a disease that renders us too ill to fight. Hard but not impossible!!
100% with you.
Check “How to Survive a Plague” documentary about how HIV patients stood up.
http://www.cortjohnson.org/forums/threads/how-to-survive-a-plague.2661/#post-5384
Kudos. Everyone needs to see the documentary and deeply understand how something tangible gets accomplished in the real and impolite world. I have been bringing up the example of the mostly male AIDS community for years; they were not afraid to act up and got their situation done or at least well under control. There have been repeated comments from people on this and other forums, mostly from women, who have stated their fears of alienating their doctors or “the authorities” by speaking out ever more strongly/boldly for action en masse. What has that ever gotten anyone?
People, politeness and niceness (not the same as EFFECTIVENESS) will get our situation exactly what we have now: Nothing significant. Lyme/crossover people share many of the same issues. Similar inflammation-linked groups can share strength.
Freda,
Yes! Are you aware of the evidence concerning the possible outbreak of AIDS as related to early trials of hepatitis B vaccine in gay men? I wouldn’t necessarily pay attention to that info, but I remember the Tuskegee experiment where black men were exposed to syphillis and intentionally not treated.
Just the other day there was a report on NPR about the WW2 experiments with mustard gas and the intentional exposure of 60,000 U.S. Troops. They were not told, and many were denied Veteran’s benefits for life long health issues known to be a result of exposure. This denial of benefits occurred even after the truth came out and the Veteran’s Administration said it would be compensating individuals.
During the AIDS crisis, Larry Kramer wrote a newspaper article in which he called Anthony Fauci an “incompetent idiot”.
Has anyone at the NIH learned from those experiences with AIDS?
Sigh.
I’m glad to see this important call to action popping up in various key places because I think it needs to be seen.
From a UK perspective, I see a massive vacuum where there ought to be a national US ME advocacy organisation (I’m aware of the history of the former CAA). Until you’ve got one, there’ll continue to be a disastrous lack of leadership and focus and of any ability to respond in a reasonable timeframe to events and opportunities.
At the moment, for example, Llewellyn King is leading a campaign to get a congressperson to adopt ME as a cause. If one does, the first thing they’ll do is to look for a national organisation to inform them about what needs doing. Without one, I don’t know what they’ll do.
I really hope that this aspect at the very least of Dr Gurwitt’s plan is taken up. I hope discussions are already going on behind the scenes on this.
The U.S. may not have a national organization, but there is the US-based international organization, the IACFS/ME.
Wouldn’t that be the best place to start discussions on forming a Political Action Group?
Adopted from the strategist Sun Tzu:
It is said that if you know your opponents and know yourself, you will not be imperiled in a hundred battles; if you do not know your opponents but do know yourself, you will win one and lose one; if you do not know your opponents nor yourself, you will be imperiled in every single battle.
Your opponents are the health/medical/disability insurance industry and the APA who fund congressional and presidential elections to the tune of $400 – $600 million dollars per annum and who have thousands of lobbyists (former HHS/NIH insiders) working on their behalf to pass key legislation favorable to their industry. They are the cabal opposed to any funding that could impact their industries bottom line.
Finding a biomarker, or a cause of this illness, a treatment regimen that works is the only way to force the NIH to stand up and take notice. Perhaps, piggybacking off a research breakthrough in another similar disease category might be the key to more funding.
In that regard, perhaps it would be wiser to find a individual who has a proven tract record in obtaining funding for medical research from private foundations. There is also the possibility in approaching the multi-billion dollar pharmaceutical industry who would be potential stakeholders on our side once a biomarker has been found.
It would be hard to achieve critical mass from this discordant patient group and the strategy of patient advocacy was tried a decade ago but failed. Besides, the Gulf War Veterans had Congress on their side along with their own research but policy decisions from the executive branch spelled doomed for their group as with ours.
What would be a disasterous mistake to make, is repeating the same actions of the last twenty years expecting a different result!
Exactly. Those who do not know the work of Sun Tzu and master it will fail to have the political savvy to get the cabal/system working on their side. Radically change strategy to avoid another thirty years of living death. For God’s sake do find and hire the most effective result getters, vet them carefully and stop allowing the power groups to pull their divide-and-conquer techniques on us.
Thank you for this important comment. So true. Some of our opponents may be obvious, and some may not.
Ecoclimber,
I agree with your thoughts here, you are right in your analysis I think. We have to break through some of these barriers, not an easy task!!!
In my view as a past Suffer (if I can say that, only time will tell), & as an Observer & Advocate within the ME/CFS community, a new strategy is needed, maybe an International one?
I have been following many forums & organizations, directly as well as on the net, there is no doubt there is a common thread within these groups. The active participants, internationally, want to be, HEARD & MAKE CHANGES.
We have been stone walled for to long.
I am sure, like many campaigns before us, we cannot give up. We will win the fight, maybe not tomorrow or the next day but some day.
We can we start a fire, maybe through this forum, which leads to a solution?
Food for thought?
I have often criticized ME/CFS Australia & other organization with in the system (to other suffers). It’s my belief that most organizations & decision makers have to play within a larger set of the rules & etiquette, some obvious some not. This is the challenge, being able to work with those rules & be heard?
Because most of us here have experienced or are experiencing ME/CFS or know friends or family who have been effected, we WANT CHANGE.
Perhaps this passion will crystallize into a new approach?
Keep the dialog going…….
I have not read all the comments, but I am sure they will reflect some of my views.
Another GREAT article, thanks to CORT.
As a past suffer of ME/CFS, I know first hand what this condition can do to our quality of life.
Surly it is time for political action, given the current grid lock within the houses of power.
Armed with the latest reports and given the current mood within the ME/CFS community, wouldn’t they provide the necessary insensitive for a change? Because the funding bodies are not listening to our calls it is time for action, therefore I believe political action is required.
Remember the AIDS community was in a similar position in the early 80’s, in their fight for change. Now it is our turn?
It’s my view too, that we need a POLITICAL VOICE representing the Me/CFS community, in order to make those lasting changes.
I would be happy to be directly involved in any such movement.
Fauci has been in his position since 1984? That is way too long!
That sarcastic observation seems true, that science changes one death at a time, as not enough scientists maintain that open mind essential to the field.
Sarah
Based on a history of inaction by Congress, NIH, HHS, need to:
Promote doubling funding of NIH over 5 years, as proposed by Newt Gingrich, and make this a platform for both parties for upcoming elections. Perhaps we can get both parties to agree for once, because even politicians are getting older, and know they would like better medical as they age.
Once NIH has more funding coming, then it will be easier to fund ME/CFS with new money, vs competing with other valid diseases like Alzheimer’s.
The president is pushing a BRAIN initiative, and ME/CFS affects the brain, so this is a great forum
Many ME/CFS etc patient give heroic efforts despite their illness to promote research into diagnostic and treatments or cures. Many have family, friends, spouses, coworkers who are not afflicted and hope they can take up this cause on their behalf. My son is 21 years old, was at a top university, straight A’s then got ME/CFS less than two years ago, and now spends for almost 1 year 23 hours a day in a dark room, only able to eat and talk 2-4 minutes at a time. My wife and I are not afflicted, and spend a lot of time trying to help progress this area.
If 1 million people in USA have ME/CFS and we were to self fund to get this going at higher speed, and we, our families and coworkers, each donated $1000 per year, this would be a Billion dollars from US to focus on diagnostics and cures. I know some cannot afford this amount, some can afford more, but is we could get even 10% of afflicated families to donate, this would be $100M. Per year. I plan to donate $1000 this year. Can you?
My company matches 1:1 for any non-profit per year, so this will double the my contributions effect to $2000/year.
I do have at moment, 100 bumper stickers I printed, and can donate 2-4 each to anyone who sends me a size 12 envelope with an enclosed size 12, self addressed, stamped envelop. The bumper sticker at moment says (due to limited size to be readable):
Can U Say M.E.?
Myalgic Encephalomyelitis!
Cure: cfsresearchcenter.org
Send this to me at Mark, 20 Lomond Ct, San Ramon, CA 94583-2561
If you have a better idea for bumper sticker, let’s hear this and they can be printed. Cost each to me approx 70 cents. If we ever did 1000 stickers, cost per sticker drops to 60 cents or so. I get mine from Buildasign.com, but you can also design any you want, print and use yourself or distribute, 2 or 20,000. Then we will not be so invisible.
I have sticker on front and back of 3 cars and park near work entrance. I also wear daily “End ME/CFS wrist bands to work daily, and to conferences. If people ask, I then educate this on ME/CFS. Some have now requested I send stickers to them in Texas, so will get more visible there. Some management has now offered to make donation for this since they know how much this affects us.
Many parts of the country have wealthy philanthropists, seeking good causes. Tim Cook, head of Apple, has his friend Steve Jobs die from Pancreatic cancer. Could we one month, via Cort Johnson for example, ask all with time to write him. Following month pursue Oracle, or Google, or Linked, Intel, or other top 500 public companies (or better perhaps private, or Wall brothers of Wallmart fame). A $10 million dollar donation by a multibillion dollar company is relatively little, and might give them some good PR, showing that they are leading for ME/CFS, just like others have lead for HIV/AIDS, with great success for that disease, now treatable, vs previously a death sentence.
If we were to have a End ME/CFS hat, except at work where not allowed, I would wear this every day, and get publicity. If a portion of 1 million afflicted did this, ME/CFS would become well known, then funded, ,esp post IoM report and new biomarkers.
Any publicity anywhere is great. Even better, if we strive to focus esp on publicity near D.C., Bethesda (NIH), Atlanta (CDC), HHS and key cities esp SFO (UCSF, Stanford, OpenMedicine), LA, Boston, Charlotte, Reno, UT, AL where there are great school, great companies with wealth, and already ME/CFS centers, this could do some leveraging.
Putting info a links on social media, including Linked, facebook, etc also educates others, then can like comments, and proliferate recognition of this debilitating, costly disease and need for funding,research and cure.
We can do this. We will do this. Let’s move on it now!!!
So many excellent points made, Mark C. and others.
Maybe we can start with the idea of a mass mailing to a select individual or corporation that has a philanthropic philosophy?
I can’t do a lot and suspect the same for most others with this illness, but I can write a letter. Perhaps in this day and age of mass emailings and other rather impersonal methods, maybe an individual hand-written note from several thousand people at one time to a specific source could draw the needed attention.
It seems like we could accomplish this right from this terrific site that Cort has put together and hopefully gain momentum with other sites contributing. We could come to a general consensus of key points. IMO our letters wouldn’t have to be long or complicated. Maybe just a sincere explanation of how devastating this illness has been to our individual lives and just how much we have been ignored by the medical profession.
Why not start with the Gates Foundation?
Post an address, timeline and topic outline.
Ideas?
Little to lose, everything to gain.
Greg, I live in Canada and although we have less population, we definitely have some very wealthy people/philanthropist as well as corporations. Man, if I had the energy I used to I’d be asking for meetings with people involved in handing out money, as all good corporations should do, and most do, to charities etc.
I am researching who they are and composing a letter to send.
So in my small way I’m going to be pro-active.
Would anyone like to help by listing some key words or points that we can get across in a succinct letter? I’d appreciate any help.
Hi Katie,
You asked for key words for a succint letter to raise awareness of ME/CFS. I would mention that as ME/CFS patients we suffer loss of abilities in most, sometimes all, areas of living. This illness reduces quality of life not only physically, but also mentally, emotionally, economically, and professionally. We very often lived active lives and enjoyed rewarding careers before contracting this disease. Based on the personal testamonies among those afflicted in support groups and forums, patients lose 60 to 80% of former activities with some losing close to 100% of mobility and self-sufficiency. We are people who would fiercly prefer working and helping others. Instead, we find ourselves having to rely on family, friends,and health aids to assist us with basic tasks we had always taken for granted.
Hope that helps.
Yes, that helps a lot. I’m also going to scan some other blogs for key words or sentences.
I’ll let you know what kind of responses I get. It may take awhile but I’ve got the time and like projects.
Hi Katie,
You asked for key words and points for a succinct letter to raise awareness of ME/CFS. I would mention that as ME/CFS patients we suffer loss of abilities in most, sometimes all, areas of living. This illness reduces quality of life not only physically, but also mentally, emotionally, economically, and professionally. We very often lived active lives and enjoyed rewarding careers before contracting this disease. Based on the personal testamonies among those in support groups and forums, patients lose 60 to 80% of former activities with some losing close to 100% of mobility and self-sufficiency. We are people who would fiercly prefer working and helping others. Instead we must rely on family, friends,and health aids to assist us with basic tasks we had always taken for granted.
Hope that helps.
Greg,
There are so many good comments in this discussion, as you point out, the change in technology will surely we benefit any campaign.
I think your idea of approaching the Gates foundation is a really good one. Together with some sort of letter from individuals.
I agree too, our own restrictions, due to ME/CFS, have to be taken into consideration & any effort/approach, has to seriously consider this.
This site, Health Rising, does provide an excellent start for a coordinated effort.
Perhaps as you suggest some sort of bulk mailing campaign could be a good start.
What do others think?
Mark,
Great points. I have a couple of suggestions. One for a bumper sticker. If there are about one million people diagnosed, then each of us is “One in a Million” so why not tell the world? “I’m one in a million who has ME/CFS” or something to that effect.
Also, like most, energy is limited, but I need to feel like I’m contributing something toward my recovery. I live on disability as does my husband, so monetary contributions are out of the question, but I have time and perhaps 3/4 of my brain’s former processing power. I’d be happy to write, edit, make calls, even attend a few (minimal) meetings with possible contributors in my area. As others have asked, I’d need the “party line” to work from, but if each of us can contribute a few calls or letters, well directed, to those who can make a difference, in an organized way – who knows? Maybe our reluctance to speaking up for ourselves and being well mannered IS our achilles’ heel.
And finally, I’ve noticed in this forum, as in most ME/CFS forums, that the population of readers tends to be well educated critical thinkers who have been derailed from whatever they used to contribute to in life. This disease seems to target high achievers as a rule. These are also the people who contribute – or would have contributed – a large percentage toward society as a whole. I don’t think this point is made enough. The country is being robbed of its best and brightest simply because when we get sick, we never return and our contributions never happen. The “what if…” scenario could be played up more to help people to realize that by not funding our wellness, they’re missing out on what could be if we were back in the picture. For instance, I work in helping gifted kids with their socio-emotional needs to assist them in finding out how to use their talents and abilities and how to develop healthy outlooks on life while doing so. I advocate for their needs in their schools, help find resources, and support their parents. Or at least I did. I’m sure each of us can show how we used to contribute, or for the younger ones, how their ideas and dreams were going to contribute. Anyway, it’s a thought on an approach.
Hope it helps.
Sean Parker want to give away $600M for philanthropy & is all for funding immunological research and has allergies he would like to cure. Can we assess if we can have a mass campaign to write him to support ME/CFS, such as openmedicinefoundation or others, solveCFS etc. He is known to want to buck trends and upset the status quo. Brilliant folks like this would love to shine by showing silicon valley or other tech centers can innovate rapidly, esp in areas where fed response has made snails look fast.
http://www.nytimes.com/2015/06/24/business/dealbook/a-tech-billionaire-seeks-a-new-approach-to-charity.html?_r=0
I agree completely. We need a centralized website to organize and generate petitions. This is a challenge since we’re all sick. I don’t have much free time, nor do I know anything about establishing a website or generating petitions. I sign a lot of them and write a lot of my own comments. I have an English degree and can help with editing. However, my desktop is old and I can’t exchsnge PDF’s. But if I can help in some way, let me know.
We’ve got such a site:
http://meaction.net/
Wonderful!! I’m new to the forum. I’ll check out the website. Thanks!
Thank you!!
Thank you! I can’t access it from my mobile device. I got “site not found.”
The are many of us that are chronically ill and need help now!
The IOM report has some great information, but how soon will it take for us to get some real help?
Everyone,
I have more or less recovered from ME/CFS, so I have some energy & capacity now.
Like most of you I have experienced rejection from every quarter, people simply don’t understand & can’t provide solutions.
I had a Heart Bypass Surgery 18 months ago, a breeze compared to my 12 years with ME?CFS, simply because people understood & had solutions.
REALLY, WHAT MOST OF US WANT, IS OUR HEALTH BACK, RIGHT?
We could be wasting time trying to influence the current status quot?
I think we should be looking for ways to support finding a successful treatment for ME/CFS. Not changing the powers that be, but rather finding a solution which nobody could reject. This might come from left field? Given the efforts in the past by the ME/CFS community and others we still do not have a cure for ME/CFS.
I will use the example of the Indian Prime Minister, coming up with, the World Yoga Day. He presented this, I think to the UN and got a unanimous agreement, something not seen in the UN before.
A good idea is a no brainier.
I think developing an effective strategy to support finding a cure for ME/CFS might be a good use our energy.
Coming up with something so nobody will be threatened or offended by. This maybe a tall order, but we need some big picture think here?
We could waste so much energy directing our efforts into changing the attitudes of the current organizations or discussion makers. This effort might be better spent in work shopping a new approach in find a cure for ME/CFS, given most of us have experienced ME/CFS !!!
Who better, understands the condition, POWER TO THE PEOPLE.
Hi Howard, How did you recover from ME/CFS? You wrote that you “more or less recovered.” Did you find a helpful treatment? I appreciate your continued advocacy!
Hi Julie,
Thanks for your interest. To be honest there is no one answer and it is very difficult to identify any one factor.
As a follower of this site, I am presuming you are well acquainted with most protocols and recommended treatments?
I am not sure how long you have ME/CFS, but I had it at 10-12 years, so it may have just been time which healed me.
I firmly believe that ME/CFS has a viral component, so my immune system may simply have improved enough over that time so as to suppress the many ME/CFS symptoms?
However, pacing is still very important, it keeps my energy stable. I am not the person I was before the illness but I can function & live a productive life now,but for how long? I have friends who have relapsed.
I would need to write a rather a lengthy article to answer this question fully. You might care to email me directly, (ask for my address)?
I tried all the Conventional Therapies as well as many of the Alternative Therapies I could think of. After spending close to $100,000 AUS dollars, here are a some thoughts.
Use Supplements such as, fish oil, CoCQ 10,150mg, Magnesium, probiotics (vary them), vitamim D, multivitamin are all essential for maintenance.
Listening to your body & do Pacing.
Meditation & Yoga.
Exercise.
Sleeping with out guilt.
Listening to Music.
Make hard life decisions, by putting yourself first.
Paleo type Diet.
Get your GUT working first to boost your immune system.
Also use Chinese Herbs to build up your immune system.
Identify anything that you are allergic too.
Go to a predestine environment ie, desert it helps you identify irritants.
Reduce Mold everywhere.
Be proactive take charge of your body, know that you know it better than any Practitioner, so listen to it.
Recovery comes in stages I found, at each stage your energy will lift. For me the last couple were not sleeping through the day & no brain fog, as well as energy rebound.
ME/CFS is as much a mental problem as a physical one, our brains are waterlogged and we can’t function fully.
Enjoy the journey……..
PS. Let me know if you would like further, more detailed info.
Thanks, Howard, for that thorough response. I’ve been sick 22 years. I have made a large downsize, but still have many responsibilities. I’m glad you’ve been able to gain improvement. It may be a year or more before I improve a little from the large event of downsizing! It involved a move that was physically and emotionally draining but will be a long term improvement.
Thanks, Howard, for your thorough reply. I’ve been sick 22 years. I’m glad you’ve had some improvement. I recently made dramatic changes to downsize my life. These changes were in themselves physically and emotionally exhausting. Several months later I’m only just coming out of the worst of the crash. I’m hoping eventually these changes will see some benefits from this life change.
Hi Julie,
My heart goes out to you and all fellow suffers. I know only to well what this condition can do to your quality of life.
So glad you have decided to down size.
Try reducing your responsibilities, I found it hard but fruitful in the end. For many of us simply saying NO is so difficult.
Are you using alternative therapies?
Not yet, but plan to see a neurologist this summer.
Good luck with that Julie. When I went through that process nothing turned up, but as you know we are all different.
Have you got your Gut sorted? This is one of the first areas to consecrate on, because it’s a huge part of our immune system. Improving its efficiency will boost your immune system so you wont be as reactive to foods & the world.
Yes, aware of that. Thanks.
Dear Mark C. and others,
I wholeheartedly agree with you with the exception of putting psa type money in the already known and well-worn arenas such as Reno, Stanford, and the other places you’d mentioned. It’s time for the message to reach those who don’t know, those who won’t get there, those who need the basic information available.
I remember that several years ago there was a contest for who could produce the best CFS PSA for distribution to all of our local TV stations to be shown for free because it is required as a Public Service Announcement So we voted on which one we liked the best, everwho was bothering to be in on the vote, as many as possible, and a great one was chosen. From there I’m not sure why but it failed to get a hookup via local patients/advocates to different towns and cities simply because a person failed to fill in that task, I guess. Anyway, it didn’t go nationwide like it should have but it was sure enough shown in my town for a simple act on my part: contacting this guy and letting the video team know.. So….. I’d love to see another contest for best TV PSA following certain truthful criteria and this time really get it out there. For free. Another bang for your buck is the huge billboards sitting empty but just waiting for a cost-only huge billboard about CFS, again within certain criteria. Of course, Mark, come to think of it, at the bottom it would have to refer the readers to a website for more information and which would that be if not the National SEID/NEI Org.
Wonder what it takes to get a national org started??? Anyone out there with any experience? How To National CFS/ME Org. 101. For Dummies. Anybody? Volunteers? Step one? Marcie
What about an international one?
After all, our opponents are beyond boundaries, Drug companies and other vested interest groups.
+ there are many international supporters too.
I would be a Volunteer.
My thoughts on our efforts to get justice are informed by Gene Sharp’s “Politics of Nonviolent Action, Part Two: The Methods of Nonviolent Action”. Gene Sharp is the founder of the Albert Einstein Institute. http://www.aeinstein.org/
For an idea of the topics covered in Gene Sharp’s analysis of non-violent action, take a look at this list:
http://www.aeinstein.org/198-methods-of-nonviolent-action-list/
We are so ill, however, that many of the actions that other groups of wronged people can take part in, we can’t. We can write letters (at least some of us are that able), sure, but as Gene Sharp points out, persuasion is the least effective form of action. Somehow we have to make ignoring us an inconvenience and embarrassment to those in power. We have to force them to do the right thing.
Although I recommend this particular book, because it was published in 1973, it doesn’t, of course, discuss the use of the tools that technological advances have made possible for political action. The Albert Einstein website, within its online library, may offer a discussion of the use of the internet. Sorry, I haven’t checked (simply composing this comment is about more than I can manage — poor brain!).
We need a high profile individual who has ME/CFS who can be the face of the disease, testify in front of Congress and grab the media’s attention. Like it or not, this is how AIDS, Parkinsons and other diseases have gotten their funding. A strong PR campaign has got to be part of our solution.
Agree that we need a high profile rep. Lauren Hillenbrand has ME/CFS or fibromyalgia. She’s a journalist & wrote Seabiscuit. She continues to work at a slow pace. Have no idea if she’d be receptive, but she’s the only celebrity I know with the illness.
Yes, agree, we need at least one high profile person. Lauren Hillenbrand would be worth approaching. We also probably need a Political one too?
I found this a really interesting blog and agree with many of the points raised. While the UK has yet to recognise the IOM report and P2P reports in any shape or form, I do feel that we should be pushing for recognition of this valuable work. Sadly, it will come back to the community to drive this as there is not the political will or commitment yet to achieve this.
We have been working with Solve CFS (US) and Emerge (Australia) to form an International Alliance of CEOs. Our charities face similar issues, although sometimes in differing ways; we are all striving to create change albeit with different approaches; we have views and perspectives which are sometimes shared and at other times at odds with each other.
But that should not stop us seeking to work better together, if we can find a way to enrich our own organisation’s work and move a step closer to the change that is so desperately needed. M.E. is a global health issue and I am delighted that charities from other countries are keen to join the Alliance. You can read more about this aspiration in one of my recent blogs: http://www.actionforme.org.uk/get-informed/news/our-news/ceo-blog-me-is-a-global-health-issue
Good luck on the Alliance!
The only way that will truly help at the medical (doctor patient) level is to get ALL Medical schools on board with current research information and try to get a mandated course taught regarding this illness.
Secondary to that would be to somehow have re-education courses for currently practicing physicians.
Regarding this point: “Produce Research Roadmap – Recruit a coalition of medical professionals, both researchers and clinicians, and institutions outside of the government to map out what are the key areas of needed research, both basic and clinical.”
This has already been done by the Open Medicine Foundation, which has a wide array of scientists advising it, including three Nobel laureates. OMF wants an annual budget of $5 million, but right now they can’t even get $300-some thousand for the first study.
I feel the first priority should be getting money into OMF’s hands, preferably huge donations from rich private donors, and federal funding.
Donate here: http://www.openmedicinefoundation.org/ways-of-giving/donate/
Many companies have matching donations, so this will double the funding, so please explore if you or others are donation. My company matches up to $1000 per year so I did donate this, and becomes $2000.
Also, Billions are spend with Amazon.com every year for example and Amazon will donate 0.5% of proceeds to any charity that you designate for all purchases. All individuals should consider donating this way since no charge to you, come out of Amazons budget. Extending this, some large company also but a lot from Amazon.com, and if some large companies could be asked to designate http://www.openmedicinefoundation.org, this would be at no cost to company or individual, just comes out of amazons budget, and could conceivable results in hundreds of thousands per year with zero hassle factor for anyone.
Yes, go to smile.amazon.com
I donate to OMF this way with every purchase. It’s super easy to set up.
I’m a bit late getting onto this.
How about writing to the President? And sending him a petition? Because he did promise a patient that he would do something about ‘CFS’. He could be told that we’ve had the IOM and the P2P and we are waiting for action now. Could he kindly follow up? He seems to be in action mode.
He could be asked to imagine what it would be like if, after a basketball game or less, he couldn’t do anything for weeks. We’ve waited for 30 years, etc.
Meanwhile the other ideas could be followed up as well.